Member

Hi all,
I was wondering if anyone has a document/binder to share where all the important information one should know about one's pALS is in one place (contact info for doctors, nurses, etc.; medication list; etc.)

I know we should probably have compiled such a thing already given that my husband was diagnosed more than two years ago and is quite advanced but since I am home, we've never really had a need for it. However, I am going away for the first time in a year...just an overnight for a college friend's milestone birthday. I know it will be good for me to get away and he should be fine, but I'm a bit wary to leave and realize that having this information handy would be at least a starting point to put my mind at ease.

We have a live-in 24/7 PCA/caregiver who will be here. He is absolutely amazing and takes care of all of my husband's care however, he has some limitations...like, for example, we kinda don't think he can read (I know, I know but he makes up for it in so many other ways). My kids (15 and 18) will be around and friends will be visiting over the weekend so they would be able to help our PCA with any reading or needing to contact anyone, should the need arise.

So, if any of you more organized people have such a document already that I could use as a starting point, it would be immensely appreciated.
Thanks!

Distinguished member

If your PALS has a smartphone, I would recommend using it. An iPhone comes with a Health app that includes a Medical ID section that can be updated with contact information, medications, conditions and so on. The Medical ID function is also accessible through the emergency screen when the phone is locked.

Another alternative is a medical id bracelet with a built-in USB flash drive. I have two of these, both from my local ALSA chapter, that I routinely update with all information including copies of my advanced directives and power of attorney. I even download my medical records after each appointment and upload them to the flash drive.

Extremely helpful member

I've started compiling my own list but I also have an APP on my iPhone specifically designed for ALS. It has sections for critical information and emergency contacts. I also plan on scanning all my documentation so it can be on all my devices.

I've had lots of time to do all this but never got around to it. Now I'm doing one new document every week.

Senior member

I don;t know if they have them in the US, but in Canada we go to the ambulance station for the refrigerator tag. It is a fold up form that has space for Name, address, illnesses, doctors and a medication list. It all goes in a plastic folder with a magnet on the back to go on the fridge. Paramedics know to look for these when they arrive. It can't hurt to ask.
Vincent